Chapter 4

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Life with a beautiful yet severely handicapped child was like entering a special, kind of alternate club, that nobody wants to join. We didn't really have any "regular friends" most were other parents with handicapped children.
Most of the people I knew before Melissa was born, seemed to slip from my life. I never went back to the bank, but Michael needed to work for us all, which he always did without complaint. I used to think most people were afraid to be friends with us. Maybe tragedy was catching. I often believed they thought: How can we talk about our own children's accomplished milestones when your child will never achieve any?

Life for us now consisted of going through a metaphorical revolving door. From the hospital, physiotherapists, specialists and back again! Living with a special yet completely immobile child who could and would never recover was at times almost unbearable. The most important person I met, however, was at a Cerebral Palsy family meet up, she was a wonderful woman named Suki Kaur. She had a loud voice, with a personality to match, she was Asian, but often wore African inspired clothing, which more than matched her personality. Her own thirteen- year-old son Ramon, had a brain injury that resulted in limited movement and speech, but, gifted him with immense intelligence. She set up the group when she realised the isolation that having a handicapped child inflicted on parents and carers. Everything we suffered, she had too. She was so strong and positive and confident. I always wished I was like her. Her friendship with me was genuine. No matter what the issue, if she could help she would. Sadly, I didn't always take up the invitations, as it was difficult for me to admit how I struggled to cope. Thankfully for me, Suki didn't take my pride lying down. She would often turn up at my house unannounced, with flowers, food, or both. I would tell Suki things, especially about my past, things about mum and her illness, that I didn't really discuss with anyone. Not even Michael.
I can't deny there were many times of denial. A refusal to admit that my Melissa, my child, would never see, never speak, never walk, feed herself or call me Mummy! The most frustrating and upsetting thing, was not truly knowing what Melissa understood if anything. Sometimes I was sure she could understand. There were times when I truly believed she was trying to communicate with me. In those early days there was a part of me that was so confident that one day we would be able to understand each other, and eventually, I suppose that did happen, but not in the way I could ever have envisioned it.
After having Melissa, it took my husband Michael and myself a while to contemplate having another child. The fear that history would repeat itself was all consuming. When I became pregnant with Jessica, Melissa was two, I was never truly relaxed.
It was an easier pregnancy but filled with worry and strain. Looking after Melissa whilst being heavily pregnant was not easy. My relationship with Michael went on the back burner, yet we were both still excited at the prospect of having another child and curious as to what life would be like if this baby was without problems. I always tried to avoid using the word "normal" when talking about Melissa. This, in some way, seemed an insulting thing to say, about her, as it implied that Melissa was abnormal. Melissa was just different! Sometimes like a beautiful porcelain doll. God knows I used to think in later years, I pray she isn't aware and isn't suffering!
I was determined this time there would be no delay in my new baby's birth. An elective Caesarean was my option. I don't think emotionally I could have ever gone through a natural birth again! After Jessica was born, on a snowy November day, in 1993, I was still haunted by the belief that my new baby, may have "problems". It took constant reassurance from the doctors that she was "absolutely fine".

Melissa had never cried. Never demanded my attention. How I longed to hear her cry.
Jessica's cry's filled me with a joy I can't put into words. To hear her demand food, attention, a cuddle, a nappy change. It was all new. So wonderful, but still induced so much pain that I would never know these experiences with Melissa. Jessica adored her quiet, beautiful older sister. She babbled away to her, and I'm sure sometimes I could almost see, a slight smile, from Melissa, and equally a look of irritation and even disdain, from her, but I guessed that was just my imagination. The doctors told me Melissa's understanding was no more than a 3-month old baby. I was, they said, just imagining the things I told them about Melissa. In the end, I stopped telling them, they just pitied me and thought I was deluded understandably of course.

Having two children that were almost immobile was a struggle, and as Jessica grew, there was an increasing rumbling of resentment, from her, as she began to realise how our lives were dominated by the needs of her big sister. Jessica was often affected by, various medical emergencies that I couldn't protect her from. The days out cancelled, were numerous because Melissa was sick again. Melissa having epileptic seizures in front of Jessica, which resulted in us rushing to the hospital by ambulance. No holiday's because no one could be left to take care of Melissa's needs! By the time Melissa had reached her fourth birthday, and Jessica was an active busy toddler, the strain was becoming more and more difficult to cope with. I felt depressed and sad, I had no energy. I felt a failure for not being able to cope. Michael was wonderful, and his relationship with Melissa was so special. He had accepted her, and her issues immediately. He like me adored her, and that had not changed. Sleep was a rarity, as one of us had to stay awake at night in case Melissa had a seizure. It was mostly me, as Michael needed his sleep, so he could work. I often went about as if in a constant state of hangover, heavy and exhausted, it was impossible for Michael to give up work as we needed him to be making the money, and we needed the money!

One day a routine appointment for me at the doctor's surgery changed the course of all our lives in a way no one could ever have imagined! I booked into the reception area, and sat down, waiting for my name to be called. I waited and waited. Twenty- five minutes, thirty-five minutes, forty minutes! Being typically English it took me this long to go back to the receptionist and ask why I had been waiting so long. "Did you sign in?" Said the surly woman at the desk, barely looking at me.

I wanted to scream "of course I fucking signed in! do I look like a fucking idiot to you?" Of course, I didn't say that. I just smiled thinly, explaining yes, of course, I had signed in.
"Well" she drawled, "you'll have to wait a bit longer I'll get you in in the next ten minutes". God how I hated that woman. If I'd had a gun I could picture myself shooting her through the head, without hesitation!

I walked back through the packed waiting room to the chair where I had been sitting, only to find a threatening looking man with all manner of tattoos and piercings, staring at me, with a look that said, he was just wishing for me to

challenge him for the seat. Fuck, I thought he wouldn't' be so fucking cocky if I had that bloody gun! I stood in the corner feeling absolutely and utterly defeated. After about fifteen minutes, my name was called and I headed off to see Doctor Shah. I hadn't had much to do with the G.P. myself, as most times when Melissa became unwell, I took her straight to the local Hospital's Children's ward. This was a blessing, that the Paediatric Consultant had allowed me to do, avoiding the delays at the surgery or suffer the agonies of A and E.

So, it completely threw and embarrassed me that as soon as I entered the room I burst into uncontrollable tears. I just couldn't stop. The Doctor seemed in no hurry for me to stop either. He touched my arm gently as I sobbed and sobbed until I could hardly breathe anymore.

Dear Doctor Shah. He listened to me, once I had got my powers of speech back. He listened and listened as I poured out the pain that I had been holding back for so long!
When I had finished he asked me why I had not asked for help before? I didn't know how to answer. I didn't know I could ask for help, and even if I did, what help would I be given? Dr Shah informed me that I had to have help with Melissa, or I would become more depressed and be useful to nobody.

Whilst I was relieved and realised I did need help, the thought of anyone but my husband or myself looking after Melissa seemed unthinkable. How would they understand her? We had an unspoken code, that only we knew. How could I trust them? How could they love her? She needed love. She needed to be held. I wasn't really sure if I could cope letting someone else into our alternate life? The trouble with that was, that I knew I was going to have to, or else I was going to go insane! Doctor Shah gave me the name of a Nursing Agency, where I could get help with Melissa's basic needs, they would also come in and stay awake with her at night, in case she had a seizure. This would mean Michael and I could sleep, without having to get up every few hours to check on her.

The doctor also told me he would help us to get financial help to pay for this from the local authority.
I went home feeling excited and scared at the same time. At last, I thought everything will change. We will be able to be more like a normal family. Maybe we could go on holiday! If the person caring for Melissa, was someone we trusted? All sorts of things were whirring in my head. I couldn't wait to get home and tell Michael. Things were going to get better. I just knew it.

I got a call from the agency about two weeks later. A lady named Gemma, told me gleefully and excitedly "Mrs Schaffer, we have a great lady on our books. Her name is Julie Ward, she is amazing with children including those with special needs, and we would love you to meet her. We have told her all about your family and Melissa's requirements, and we think she would be great with Jessica too"!

A few days later I was pacing the living room floor, with nerves and trepidation about meeting Melissa's potential new carer. I was more nervous as I knew we had

an appointment at the hospital in a couple of hours, and wondered if the carer would start immediately, and come with us or stay at the house?
We were told by the agency that Julie Ward, was an experienced carer, with excellent references, and had been with the agency for two years, working in hospitals, care homes, and with families, and was one of their most popular employees. I was so worried! Would I like her? More importantly, would Melissa take to her? Could I trust this complete stranger with my special girl?

While I was pondering the doorbell rang, and I nearly jumped out of my skin. I gingerly went to the door.
When I opened it, a rather severe-looking woman stood on the doorstep. She was smiling though, which was good. I would say she was about fortyish, with very short dirty blonde hair, which I thought emphasised her narrow rather lined face. Her eyes were a piercing blue. She had thin lips, and I could definitely smell cigarettes, on her breath and clothes. She had a general look about her, of someone who had not had an easy life. This was purely first impressions of course, and rather harsh ones I thought on reflection.

"Hello," I said brightly "You must be Julie"?
She smiled broadly, and in that instant, I liked her. "Yes, I am, and you must be Rebecca"
"Yes, I replied, but please call me Bex!
"It's so lovely to be here," she said, as she shook my hand warmly, and walked in. I led her into the living room where Melissa was snoozing in her adapted wheelchair, and Jessica was engrossed in Beauty and the Beast, her favourite film on the video recorder. Julie looked straight at Jessica and waved. "Hello little miss, you must be Jessica" Jessica gave her a cursory glance, and a shy smile, and then went back to watching her beloved movie. I suddenly felt guilty. "Sorry about that," I said. "She's obsessed with that film at the moment" You don't need to apologise Julie said kindly, looking genuinely unconcerned. She turned and walked over slowly to the dozing Melissa.
"My my," she said in a whisper, "this is obviously Melissa", and as she said it she gently took hold of Melissa's hands. "She is absolutely beautiful; you must be so proud" Now no one had ever said that to me before (the proud bit I mean). She was often described as beautiful, but mostly in a pity way, in that ", she's so beautiful, what a shame she is like this". Julie seemed oblivious to my presence, for a few awkward minutes (on my part anyway). She just smiled at Melissa and gently stroked her soft hands, that in sleep were not caught in the spastic grip that was ever present when awake.
After a while, Julie seemed to snap back to the present and looking up at me asked me what plans I had that day? I told her I needed to go to the hospital with Melissa in about an hour and a half. Well, then she said. Just show me the kitchen and I'll make us a cup of tea, I'm parched, what about you? "Umm Yes, I yes that would be nice, and off she went not really even asking me where anything was, she just got on with it, and soon I could hear the rumblings of the kettle heating up. Wow, I thought this feels good, this feels really good! During tea, we chatted about various

things (Melissa mostly), and when we all set off in our adapted vehicle about an hour later, Julie was chatting away to Melissa and Jessica in equal measure, I felt what I can only describe as hopeful. Things can only get better I thought. Just for a second though, it crossed my mind that, doesn't she seem too good to be true? Don't be silly I told myself.